Thyroid Disorders Community
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Avatar universal

Living without a Thyroid Gland

Good afternoon. This is my 1st time on this site.  I had a total thyroidectomy 3 weeks ago.  They suspected cancer, but It ended up being benign.  Yeah.  

To back up a bit, I was diagnosed with Hypothyroidism at the age of 22 and then figured out the cause of the hypothyroidism was Hashimoto Thyroiditis at the age of 28. Well, over the years nodules were found on both sides of my gland and were monitored. About 6 months ago during my annual exam they noticed my gland was extremely enlarged and my nodules were abnormally large. Well, we ran all the tests and did a needle biopsy. The report came back as suspicious. At that point I met with the surgeon and the rest is history.

I am pleased to be through the scare, but now need to find out about living without the gland.  Over the last 3 weeks I have found myself to be very weepy and emotional. I am also very tired during the day, but struggle to get a good nights rest. I have also woken up with the feeling of panic attacks. My guess is that my dosage is off. Right after the surgery they put me on the same dosage of thyroid replacement medicine (150 mcg) I was on prior to the surgery. I have 3 weeks to go until I have my levels tested.

So, I am 31 and struggling with all the chemical changes in my body.  Sometime I feel as if I am going crazy with all the emotional lows I have. I should be elated that I am cancer free and able to move on with life as normal. But I do not feel that way. Help.

Can anyone offer me tips on how to cope and any suggestions on a healthy lifestyle (diet/exercise) regimen I can incorporate into my life. Any idea of some the hurdles I might need to prepare myself and my loved ones for??

251 Responses
Avatar universal
I'm a bit confused about some of those test results you posted.  Please post the reference ranges for each, so we can give you the best response.  
Avatar universal
I found your thread this morning whilst trawling the web in desperation. I know that sounds dramatic but right now it is how I feel. I had my thyroid removed with papillary cancer six years ago and can identify with everything you say. I feel a sense of relief that I am not alone (although so sorry that you too are going through this awful thing) but right now I just don't know how to cope.
The initial relief following the cancer treatrment has gone for the most part and of course while  I am so very grateful for the medical support I have had I constantly feel that I am struggling. I see my oncologist on the 13th Sep (Friday13th unfortunately!) for my yearly meeting and I just want to be able to communicate how I feel without coming across as some neurotic - which is how I seem to make myself look! My blood results seem to indicate all is as it should be yet I still have these awful 'episodes' that I can't predict or control. Extreme fatigue, sometimes with uncontrollable yawning, anxiety and a feeling I am losing myself ( I just can't put it into words but when I feel it I just want to end it all because I feel lost and helpless) Then I can feel fine for a while and try to make the most of these times but it is never far away.
I am a teacher about to return to work next week which I am absolutely dreading - I used to love my work but now I feel trapped and panicky at the thought. I don't know how to deal with things, do I let work know just how I feel and run the risk of losing my profession or keep quiet and struggle on? After all in many ways I have already lost the profession I used to know. But I need to work, I need to pay my bills, my home...live!
Lots of decisions that I can't seem get my head around.
I just needed to rant...so thank you for listening!!!
Avatar universal
Please post your thyroid related test results and reference ranges shown on the lab report.  Also, if you have been tested for Vitamin D, B12 and ferritin, please post those and their ranges.
Avatar universal
I had for some reason over active thyroid. Took seven doses a day of 500 mg high quality olive leaf for seven weeks and now I'm normal. That is not to say this is a cure, but recommend everyone read up on the medical quality olive leaf. I gagged a bit on the dose but the benefits were awesome.
Avatar universal

what is the effect after removing all the thyroid? I just want to know coz i'll be going in radioactive on decmaber. my dr. said that if it will remove all the thyroid I will be taking a vitamins for lifetime. and the other option is not to remove all but i should take a medication too. please help.thanks.  
Avatar universal
What tests are usually done after a TT?  I'm 15 months post-op, parathyroids went to sleep, one was removed, I was in the hospital for four days due to low calcium.  I was started on a high dose of generic synthroid but it keeps being lowered.  I was on 6,000 mg of Tums plus calcitriol and got kidney stones, had them removed, stents places, experience from he!!.  Now I know that I have alkaline reflux, the Tums weren't being broken down or absorbed, I was taking magnesium but my magnesium, D3 and calcium are low.  I'm suffering miserably from alkaline gastritis.  My endo only checks my TSH and won't prescribe Armour.  I feel like "yesstream" who posted a few months ago.  I don't care if I live anymore, have no life, no energy, horrible stomach/GI problems, broken nails, losing my hair, insomnia, fatigue, episodes of depression, brain fog, confusion, irritability, no appetite but now gaining a few pounds without even eating.  I just don't know what to do.  I still flush, sweat drips off my arms and legs, but I don't get the palpitations or high BP anymore ..... otherwise I'm still miserable.  I had symptoms, questioned my thyroid, TSH was at .4 but the symptoms were attributed to menopause for 10 years.  After an auto accident my life fell apart, I was diagnosed hyper, goiter, multiple nodules within two months and my TSH went from .01 to .004 in a year.  I had biopsies that were benign, the nodules were calcifying, I had high iodine, did the low iodine diet and was to do the RAI kill but my endo moved away.  The new endo I found was all about surgery, something I regret doing.  Now I feel all alone in my plight.
Avatar universal
Sounds like you desperately need a good thyroid doctor.  A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  You can get some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he sometimes consults with after initial tests and evaluation.  The letter is then sent to the participating doctor of the patient to help guide treatment.  In the letter, please note the statement, "the ultimate criterion for dose adjustment must always be the clinical response of the patient."


If you will tell us your location, perhaps a member can recommend a good thyroid doctor based on personal experience.  
Avatar universal
New York City can kill even a healthy person because of the toxic and selfish attitudes there.  I would suggest if at all possible to start life over in some wide open country in a small town like Montana or Wyoming or Utah or perhaps somewhere sunny and warm.  If you have enough money for 1 Greyhound bus ticket, you can do it.  Once you get there, you can work as a waitress or something and perhaps even qualify for food stamps for awhile.  Who, knows, you might meet a nice cowboy who you might consider for a long term commitment, rather than to just not be lonely.

I don't know if you are on Synthroid, but you might want to change to Nature-Throid which is natural and contains T3 in addition to T4.  Synthroid is synthetic and loses its strength over time as your body builds a resistance to it since it's synthetic.

Another good idea may be to take l-tyrosine (maybe as much as 2,000 mg a day in divided doses), which not only helps strengthen your intestines, but improves mood and fights depression because it improves your neurotransmitters (many of which are created in the intestines believe it or not).

Also, with your difficult divorce and shocking betrayals from so-called friendsd, you may also be suffering from lowered adrenal function.  The thyroid surgery, the divorce or the betrayls are each individually enough to deplete your adrenal glands and together they did you a whammy.  You should look up Dr. Lam online and read some of his blogs abour adrenals and stress.  You may definitely benefit from asking your doctor or naturopath to prescribe you some micronized hydrocortisone cream (50 mg trength) to use as needed.  That is not a high enough dose to cause your body to shut down creating it's own adrenaline -- it will simply support your adrenals enough to allow them to start making their own.  You should not opt for Cortef or some other oral prescription cortisone tablet/capsule because they are much too strong and can cause more problems than they solve.

Depending on your age, you might consider it's time to start using topical bioidentical hormone creams such as Estradiol/Estriol with Progesterone.  If your adrenals are already taxed, they will "steal" from your existing estrogen and progesterone stores and convert those hormones to adrenaline in order to maintain the more important adrenaline levels.  But this will deplete probably already low levels of estrogen and progesterone, causing MARKED symptoms of low estrogen and progesterone, which would include thinning hair, night sweats, hot flashes, insomnia and DEPRESSION.

Between switching to Nature-Throid, adding l-tyrosine, adding topical 50 mg strength hydrocortisone cream and topical bioidentical hormone replacement creams and moving somewhere sunny and welcoming, you could see a big difference.  Then your biggest problems might be learning how to square dance, bake pies and clean your cowboy's boots.
Avatar universal
After looking at some of the responses here I now know exactly what to expect. I too have trouble breathing sometimes but people have always told me that I was suffering panic attacks. I do have extreme panic episodes that sometimes leave me shaking from every limb. I had my thyroid removed on February 12, 2003 due to thyroid cancer. I have lived with unstable menstrual cycles, constipation, weight up and down, insomnia, sleeping for hours and hours. I sometimes feel like I'm going crazy with the thoughts that run through my head. (not sure if this is a related symptom) My doctor has even told me at times that everything is in my head and if I just think positive everything will be ok. People think I'm nuts and even though I try not to believe them I often find myself questioning whether or not they are right. I have days of no energy whatsoever to lots of energy but my levels are all within normal range so says my doctor. Thanks for this site though great to read all the info.
Avatar universal
I don't understand how doctors can think that a thyroid test result that falls in the low end of the range can be considered just as adequate as one in the high end of the range.  Yet, they never bother to take the time to assess why their thyroid patients so often complain that they still have symptoms, even though their tet results are "normal".  

Have a look at this info.  It is only one source of similar info that clearly says that the current ranges are not functional for many people.

"High individuality causes laboratory reference ranges to be insensitive to changes in test results that are significant for the individual.

The width of the individual 95% confidence intervals were approximately half that of the group for all variables.

Our data indicate that each individual had a unique thyroid function. The individual reference ranges for test results were narrow, compared with group reference ranges used to develop laboratory reference ranges. Accordingly, a test result within laboratory reference limits is not necessarily normal for an individual."

Andersen S, Pedersen KM, Bruun NH, Laurberg P. Narrow individual variations in serum T(4) and T(3) in normal subjects: a clue to the understanding of subclinical thyroid disease. J Clin Endocrinol Metab. 2002 Mar;87(3):1068-72.
Avatar universal
Hi Troper,
I have similar situation, I want to plan for pregnancy in few months and my doctor said I might have overactive thyroid, and referred me to endocrinologist to evaluate.
Can you share how did the surgery go? Did your doctor say that surgery was really mandatory in order to be pregnant?
I hope things are just fine with you now.

Avatar universal
hi! my doctor advised me to have my thyroid removed due to several nodules some of which are echoic but there are some said to be solid. we have been monitoring it since 2008 (from a single echoic nodule), even had FNA which yielded a positive result. thus, we just continued to monitor it ... no medication given.  i went to see an endocrinologist last year and said i should have it removed immediately ... which i did not.

now, i am worried. i am not sure if i can do it. my doctor said i need to take medicines for the rest of my life, calcium and exercise ...all manageable i guess.  but i am worried on the - mental ones. is depression and sleepless nights really common experience?

Avatar universal
i had my thyroid removed 15yrs ago after finally being diagnosed with graves diseas after 10yrs of doctors having no idea, even though my symptoms remained pretty much the same.
if i had my time over and knew then what i know now concerning the thyroid i would have done so much more research before having surgery, however my choices were limited as i became allergic to the steriods given to me to reduce my thyroid and i wanted more children and had been trying for three years and nothing happening, this was after already having one child 8yrs earlier.
over the last 15yrs i have a had very unstable journey with trying to feel " normal" and more importantly find a dr who understood thyroid and all it involoved, which was a a task in its self. for the first five years there was not much change from before surgery, i still felt all the same symptoms but i did manage to have two more children, though probably not the wisest choice as they drained me even more than what i was already feeling. i finally found a dr who did extensive tests and found that my body wasnt converting t4 to  t3" i as put on srt3 which here in australia is made at the compounding chemist and is not regarded as worthwhile thyroid treatment, but i totally disagree. it was the first time in years i began to feel normal, i did also go through a rather intense detox which meant a herbal combination a very high doseage multi vitamin and various juices. my adreneal galnds were shot to peices And need much TLC.
Unfortunatly this dr went back to research and for the next 6 yrs i felt like **** again as no other dr  would prescibe the srt3 for me.
i have been blessed and finally found anothe dr who understands the thyroid and is a female, which is an added bonus. 11 mths on and i feel much better being back on the srt3, i do however have constant problems. i suffer from major anxiety and have done research on this and very much linked with the thyroid as is iron diefiecency which i also suffer from to the degree that i need regular infussions. i have also been diagnosed cealiac which is also related to thyroid, as is thinning of the bones due to exteneded use of thyroxine. i have constant, joint pain am very short of breathe and so far test have shown that i have resticted breathing, great now unrestrict it.
i am very grateful that at this time i actually feel good, even though my level of normal is very removed from most. i deal daily with mental health, physical health and most impactual emotional health as i feel complelety not me and not very nice at times and get even more frustrated when going to a dr for help and being told theres nothing to worry about.
you need to listen to your body, after all its yours and you know it better than anyone. if im feeling good and my test come back saying that i am on the high side, i dont care. i feel good and if the dr tells me to lower the dose, i dont unles i feel that i need to. over the years i have pretty ,much learnt the dose thats right for me.
not having a thyroid is so involved and theres so muc to it. the best advice i can give is to keep pushing, asking and changing drs if yur know you're not right and find someone who will listen to you.
Avatar universal
For anyone else facing such a diagnosis, if possible in the country you are located try to find a doctor who uses the Afirma Thyroid FNA Analysis. This can prevent getting a diagnosis that is inconclusive or suspicious and prevent unnecessary removal on one's thyroid.

Also, even if it is positive for cancer, most of the time it will be papillary cancer which is not life threatening and even if not treated at all does not make a big difference in all cause mortality especially if you are already a senior citizen when diagnosed.

See afirma *******

You can also find an article online called "
Vast majority of people survive common thyroid cancer even without treatment" which may be helpful.
7432335 tn?1390790988
Hello everyone!

I had my thyroid removed 7 months ago, at age 35 weighing 126, for multiple nodules. I had a 4cm on my left side and 3 more smaller nodules on the right. Biopsy came back negative but total thyroidectomy was recommended by two doctors due to my age and the idea of having to be examined every six months for growth. That, and the side effects I was experiencing... severe anxiety, I thought I was losing my mind. Restless sleep with night sweats and the sensation that I had something stuck in my throat. My surgeon was great, some pain a day or two later but nothing extreme. My voice got deeper for about 2 months but is now back to normal. Currently I am on 125 mcg synthroid once a day, my doctor insist I stay on the brand and does not recommend any type of natural alternative, and 5 mg cytomel two times a day. My blood levels are normal, I am sorry I don't have those exact numbers in front of me, most of my hyper symptoms are gone but as the months have gone by I regret having the surgery! I gained 12 pounds ( I recently lost 4 pounds), my energy level is horrible, I have to be in bed by 9 pm to even attempt to get out of bed the next day.I am just now going back to the gym, my recovery time is longer and getting through an hour class of aerobic activity has never been more difficult. My facial and body skin is lizard dry and my hair has become brittle. I am trying any and all lotions, scrubs, masks... I am now juicing veggies and fruits because I hear that doing this is great for the skin as well as getting all the servings of veggies and fruits needed for the day. I know it could be worse but this is the only body I have and I would love to feel great in it all the time! Thank you for all your post, they really help!
Avatar universal
Hi I just wanted to say thank you so much for posting on here. I had my thyroid removed in January of 2011. Three years later I'm still feeling all of the symptoms you described. Nobody really understands what I'm going through and seeing the posts on here makes me see that I'm not alone.

Cara Morville
Avatar universal
i know where u r coming from i had my thyoids completely removed jan 2013,i havent been the same since ,ive gained weight ,i sweat like its 110 degrees while im asleep and during the day , t cry all the time ,ill to everyone i have chronic pain all the time,my skin is dry ,my hair comes out and doesnt grow right on 1 side,u name it i feel so lost ,depressed,i have just withdrawn from everything ,it feels like somethings attacking my body,my levels r either to high or to low,i took armor and it almost drove me crazy i went way hyper it was like 0.9 almost off scale now on levothyroxine 75 mg take 1 and half ,its still not right i dont have enough medicine in me cant find my labs ,its a yo yo ride i just dont feel good at all i have lost me and i cant find me anymore,my vit d to low ,b12 on low side,sugar to high and my closteral to high too and ive never had any blood work off i wish i could put my thyroids back,they thought i had cancer ,but i did not,had 2 nodules on left and 1 on right and goiter,my thoughts r scrambled and my brains in a fog cant remember anymore either,i thank u for listening to me and to know im not alone and that its not in my head ,its real i pray for u all God bless everyone this is a nightmare
Avatar universal
Hi, Im a 23 year old female and I had my thyroid removed in March of 2013 because of thyroid cancer. After surgery I immediately started on  high dose of 150 of levothyroxine, Currently im on 88 mcg I suffer from lots of fatigue, muscle pain in legs and arms, anixety, and heart palpatations. Hopefully things get better I don't feel like myself I don't have enough energy to do anything! Is anyone taking anything else other than levothyroxine and has seem to get better? It feels good to read other stories and see that im not alone in this!
Avatar universal
yes your right just know that you are nt alone im praying for the best for everyone!
649848 tn?1534637300
You've attached to a very old and long thread. Most of the previous posters are no longer active on the forum.  You would get a better response if you post your own thread.  You can do that by clicking the orange "Post a Question" button at the top of this page, type your comments, then click the green "Post a Comment" button.

Your symptoms sound like you aren't on a high enough dose of levo.  If you'll post your current labs into a new thread members can better assess your situation and comment more fully.  Be sure to include reference ranges with any labs, as ranges vary lab to lab and have to come from your own report.
Avatar universal
Hi!very new "just diagnosed with two cyst on my thyroid.
All the comments read are very sad ,
Does anybody know any alternative to surgery .can those cyst become smaller with any herbal supplements ?
Avatar universal
I had my thyroid out in September 1989. I've been pretty much ok all that time up until menopause. I haven't had my period in 7 months now. Does not having a thyroid have an effect on menopause?
Avatar universal
Give up teaching. It is the most stressful profession and there is no way your meds can be regulated when you are under that stress. I loved teaching but after thyroid cancer surgery I gave it up so I could have regulated metabolism.
9348734 tn?1403222920
I do too & I have a squealing sound in my throat all the time!
Avatar universal
I want to say first that I am grateful that I don't have cancer!  It's been 5 months since my thyroid was removed due to very large nodules.  I think it was functioning fine.  I had no idea I would feel so bad for so long afterward.  I believe I have a very good doctor.  She adjusts my T4 med and has added 10 mcg of T3.  I still barely function and I'm getting fat as a hog -miserable.  I will see her next week and I plan to ask for the natural hormone replacement instead of Tirosint and Cytomel that I currently am using.  Has anyone been able to feel good again after having thyroid removed?  How long does it take?   If you have changed to the natural hormone I would love to hear your comments.  Im so happy I found this site.  I welcome any help.
Avatar universal
I want to say first that I am grateful that I don't have cancer!  It's been 5 months since my thyroid was removed due to very large nodules.  I think it was functioning fine.  I had no idea I would feel so bad for so long afterward.  I believe I have a very good doctor.  She adjusts my T4 med and has added 10 mcg of T3.  I still barely function and I'm getting fat as a hog -miserable.  I will see her next week and I plan to ask for the natural hormone replacement instead of Tirosint and Cytomel that I currently am using.  Has anyone been able to feel good again after having thyroid removed?  How long does it take?   If you have changed to the natural hormone I would love to hear your comments.  Im so happy I found this site.  I welcome any help.
Avatar universal
There is no reason to think that you cannot feel well again while taking T4 and Cytomel, if your biologically active thyroid hormones are adequately adjusted.  Please post your thyroid related test results and reference ranges shown on the lab report.   Also, tell us about any other symptoms besides weight gain.  If tested for Vitamin D, B12 and ferritin, please post those, along with ranges also.    
Avatar universal
to anybody. I have high thyroid anti bodies and peridoctase levels. but normal thyroid levels otherwise. I can hardly swallow. it hurts in the back of my throat constantly. I had that FNA and came back to re ultra sound and re FNA in three months. I feel it getting worse though the endo put me on levo 50mg until I return. Ive been told its dying and I cannot prevent this. its like a dead piece of meat will end up in my neck someday if I don't remove it. my BIGGEST concern is WIEGHT GAIN. if they try to have me remove it...will I gain weight and NOT be able to lose it for the most part. If you keep and it dies in your neck., how will you ever know if it was cancerous or not? I have a multinodular goiter, two large nodules besides on the thyroid, one solid 1.2 cm the other looks cystic 1.4cm , not being able to NOT feel things as I swallow and eat or swallow and choke a little,,im so confused what to do...endo said "if any bit bigger" we can have you on a "table" in 2 weeks, and just remove it!! ugh. :(  any good advice? especially where WIEGHT is concerned here... Thanks <3
Avatar universal
to anybody. I have high thyroid anti bodies and peridoctase levels. but normal thyroid levels otherwise. I can hardly swallow. it hurts in the back of my throat constantly. I had that FNA and came back to re ultra sound and re FNA in three months. I feel it getting worse though the endo put me on levo 50mg until I return. Ive been told its dying and I cannot prevent this. its like a dead piece of meat will end up in my neck someday if I don't remove it. my BIGGEST concern is WIEGHT GAIN. if they try to have me remove it...will I gain weight and NOT be able to lose it for the most part. If you keep and it dies in your neck., how will you ever know if it was cancerous or not? I have a multinodular goiter, two large nodules besides on the thyroid, one solid 1.2 cm the other looks cystic 1.4cm , not being able to NOT feel things as I swallow and eat or swallow and choke a little,,im so confused what to do...endo said "if any bit bigger" we can have you on a "table" in 2 weeks, and just remove it!! ugh. :(  any good advice? especially where WIEGHT is concerned here... Thanks <3
Avatar universal
I have recently been diagnosed with a 3.7cm nodule on my thyroid, my primary told me that my hormone levels are normal (although I feel tired most of the time and feel like something is stuck in my throat). I am scheduled to see an Endo in a few weeks. The whole thing has me worried.  Thanks for listening and for sharing your stories
Avatar universal
Just because thyroid test results fall in the so-called "normal" range does not mean that is adequate for you.  the ranges are far too broad, due to the erroneous way they are established, and also each patient may have different optimal levels.   If you would like comments on your thyroid related test results, please post them, along with reference ranges shown on the lab report.  Any other symptoms besides being tired?  
Avatar universal
Had my thyroid removed march 2011, gained 25 lbs, lb a day for 25 days!!! couldn't breathe well, not from eating for sure. age 47 then had a heart attack on October 24, 2011. there is a connection, I'm sure of this. I have a stent and am happy to be alive. Get my bloods done every 6 months and to date still cant loose weight, now 55 lbs overweight and frustrated. thinking of adding more T3 to my pill box. everything else seems to have too many side effects. I eat healthy and now gluten free.... dr's say bloods are all good, what the hell somethings wrong, now I'm considered obese which can cause heart issues .............any suggestions for the weight loss? so hate the way I look and afraid the weight will give me another heart attack
Avatar universal
Please post your actual thyroid related test results and reference ranges shown on the lab report.  Also, tell us about any other symptoms  you have besides weight gain.  If tested for Vitamin D, B12 and ferritin (iron related), please post those, and ranges as well.
Avatar universal
I feel the same way!! You are not alone. I had a complete thyroidectomy
Avatar universal
I am not alone! I had thyroid cancer at 19 and my life has not been the same. Its been a struggle to try to regulate the levels. It is such a hassle! Im tired, moody, anxious, etc. I feel exhausted some days and others not so much. I have my good days and bad days. I dont know what to do to feel like myself again. Is there another thyroid hormone besides synthroid??? I am so frustrated with being tired all of the time.
Avatar universal
Hi I didnt read through all the comments there were just too many lol, was anyone here born without a thyroid?
Avatar universal
I had a complete thyroidectomy due to thyroid cancer at age 21. I'm now almost 75 and doing fine.  After the surgery I had radioactive iodine to "burn" out whatever thyroid tissue was left. I started at 3mcg of synthroid- now using the generic levothyrixine and down to 150mcg. My tsh was .005 at last test, t4 free  1.4   t3 free 2.1. Hang in there- you can have a long and happy life without a thyroid.
Avatar universal
By doing fine, does that mean that you have no symptoms of any kind?  If not I am surprised, since your Free T3 is so low.  Scientific studies have shown that Free T3 correlated best with symptoms, while Free T4 and TSH did not correlate at all.
Avatar universal
I am 20 years old and recently had my entire thyroid taken out because I had cancer. It has been a very stressful situation. I have felt depressed ever since I started synthroid. Reading what all these people have gone through gives me so much anxiety. I don't want to have to deal with depression, anxiety, fatigue and weight gain the rest of my life. I can't help but think it will not even be worth it to live if I will only be going through a struggle and suffering the rest of my life.
Avatar universal
There is absolutely no need to be so concerned.  What you read on the Forum are stories from hypothyroid patients that don't have good thyroid doctors who understand how to test and treat hypothyroidism.  Now that you have found this Forum you can count on all the support you need and all the information you need to assure effective treatment.  So, in order for us to best help you we need some basic information from you.  

When was the TT done?   When did you start on the Synthroid?  What is your daily dosage of Synthroid?  Do you have any other symptoms besides depression?  If tested since the TT please post the results and their reference ranges shown on the lab report.  

As you proceed always keep in mind that a good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T4 and Free T3 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results, and especially not TSH results.  If your doctor is unwilling to treat clinically as described, then we will help you find a good thyroid doctor, if you will tell us your location.  

16286079 tn?1446692871
After reading your comment and wiping the tears from my eyes, I feel compelled to tell you that I had my thyroid taken out 3 years ago and once the doctor got my Synthroid adjusted properly, I'm back to a normal life and doing everything I could before the operation! I haven't gained any weight and I haven't been depressed until reading your comment! As you read everyone's comments, remember that each of us have different problems so, not everything you read is because of removing one's thyroid! Have a long and prosperous life!
Avatar universal
Wow Bruçe  i sure hope so.. My total thyroidectomy was Sept 2015.. Up 30 #s bloat mess... No cancer/ graves disease / lg. Nodules present I keep telling myself things have got to get better...not
Hong but stretch pants and shorts fit and over sized t shirts..
Avatar universal
Wow Bruçe  i sure hope so.. My total thyroidectomy was Sept 2015.. Up 30 #s bloat mess... No cancer/ graves disease / lg. Nodules present I keep telling myself things have got to get better...not
Hong but stretch pants and shorts fit and over sized t shirts..
1139187 tn?1355710247
going on 5 years now.  still don't feel well.   Hope you are well.
What is your symptoms
Avatar universal
Going on 20years from total thyroidectomy still get feelings of anxiety and feel like I need a toilet a lot get very nervous and sick feeling if I've got to go out for tea to a restaurant can't drink alcohol next day really ill I'm on 175mcg thyroxine doctor said my blood test was fine but I know there is something wrong
Avatar universal
I'm the same I don't have no thyroid and I take meds to but ive got where I don't  have no energy what should I do
I am in the same situation and am doing lots of research.  There seem to be two camps for testing total TT patients.  One is cancer oriented where all they seem to care about is cancer and TSH levels.  They don’t care about the fact that they removed a gland that produced 3 hormones and are only giving you one. The other wants TSH at correct levels but cares about both free T4 and  free T3.  So if youre not feeling good,  you need to find an ENdo that will test your free T4 and T3 and work with you to feel better within safe ranges.  Finding an Endo to do this is tough as they are all too busy with diabetes patients.  Ask your local pharmacist which doctors are prescribing T3 and get in with one if them.  Keep at it. it’s not easy.  Hugs.
Sending you a PM with info that you might find useful.  to access, just click on your name and then got to messages.  
Avatar universal
We really can't suggest anything without more info.  Please post your thyroid related test results and reference ranges shown on the lab report.  What, if any, other symptoms do you have? What med and dosage are you taking?
Avatar universal
I am constantly shocked about the amount of bad information that is out there. So much of it comes from doctors. I had a total thyroidectomy 4 years ago and I would do anything to be able to get it back. I had Grave&#39;s disease, large solid nodules (biopsies were inconclusive) and was told by &quot;the best thyroid surgeon in the area&quot; that it needed to be removed and I would be feeling normal in 3-6 months. Grave&#39;s and Hashimoto&#39;s means that you have an autoimmune disease. Removing the thyroid or destroying it with radioactive iodine does stop your immune system from attacking your thyroid but it doesn&#39;t treat the autoimmune disease. The thyroid is usually the weakest link. Once the thyroid is gone you still have the problem of making sure you don&#39;t develop another autoimmune problem. Your body will usually find something else to go after. When you get sick your thyroid gland adjusts for that. It adjusts for pregnancy and weight gain or loss. When you&#39;re on a set dose it doesn&#39;t account for these temporary changes. For example, when females with no thyroid get pregnant they must raise your dose to provide extra thyroid hormone for the baby. It&#39;s impossible to keep up with the growing baby and changes in your body. At minimum doctors will test every 6 weeks. The constant ups and downs of changing meds while also being pregnant is not fun. You can be hypo for a while and then your dose gets raised and you can become on the hyper side until the baby grows or you gain enough weight. Then when you deliver you have way more thyroid hormone then needed putting you into hyperthyroidism. It can take 2-3 months for your body to adjust to the new dose and you feel better. That is if the dose is correct. Getting an infection of any kind is a less intense version of this. You won&#39;t have your meds adjusted for that. You just have to have low thyroid symptoms on top of the illness. Low thyroid hormones means your body will have a harder time fighting the infection too. This is not a fun way to live. It&#39;s unfortunate that most people with thyroid disease don&#39;t even get diagnosed until symptoms become debilitating or cancer has already developed. When a medical professional tells you that they have the answer to your problems, most people want to believe in that so badly to end the suffering they have been experiencing. Of course, you think they know what they are doing and are willing to do whatever they tell you to do. People need to be screened yearly and not just for tsh but for thyroid antibodies to make sure a problem isn&#39;t developing before it&#39;s too late. Most people with an autoimmune disease have leaky gut syndrome. Please research this and see that it is possible to heal your autoimmune disease. You should do this if it hasn&#39;t yet progressed to irreversible damage and even if it has and you&#39;ve already been treated for thyroid cancer. Your immune system is still overactive even after the thyroid is gone. Most doctors won&#39;t tell you this either because they have an ego that tells them medical school gave them all of the answers or because they don&#39;t make money from teaching people how to heal themselves without surgery and/or lifelong medications and frequent appointments. The thyroid gland is a very important part of our bodies. The decision to remove or destroy it should not be taken lightly. Search the internet for info, find a doctor trained in integrative or functional medicine or a doctor of osteopathic medicine, look into how to cure leaky gut syndrome, and make sure you get all of the lab tests you should have. When a doctor tells you to take a pill and the problem will be solved without being willing to talk about the underlying cause of thyroid disease, find a new doctor immediately. We have to be our own advocates for our health. It is worth the effort.
Avatar universal
I am much older than you are and am going through similar situation with my thyroid. I have been tired most of my life, but due to circumstances, had to work, get up, face the transporation, the workforce, etc., often while being tired. Now I am not working. But I will tell you this: if you're tired a lot, it's easy to get depressed. Or angry. It's also easy to get weepy I notice when something touches me emotionally, but the weepy time comes mostly when I'm tired. Yes, in order to cope, it's good to do things when you can that you enjoy.
Why are you having to just live with your thyroid situation?  What medication are you on and what daily dosage?    A good thyroid doctor will test and adjust the biologically active thyroid hormone levels as needed to relieve hypo symptoms such as tiredness, depression, etc.  If you will post your thyroid related test results and reference ranges perhaps we can help interpret why you still are not back to normal, and suggest what needs to be done.
I feel the same way and I had my thyroid removed 10 yrs ago. My endo says my symptoms are not related to my thyroid. I don't believe that and she is the only endo they have at kaiser sadly to say.
As soon as I retrieve the test results I will post them, thanks for offering help to understand them. But I had an ultrasound yesterday and the radiologist did not say anything about a node on the left side. He was supposed to look for a node on the right side which the doctor suspected was there. But the radiologist said, if I understood him correctly, that it was not something of interest on the right side. Since I'm new at this, I didn't really know what he was saying, although I tried to understand him. And then he talked about heterogeneous appearance of the gland, but did not tell me he saw a 4 cm node on the left side. Later I saw the PA who discussed with me at length that she would have the entire left node of the thyroid removed to test it, then if it weren't cancerous we could leave the right nodule alone. She also said that the 4 cm node on the left side was neither hot or cold, OR warm. Don't know why she said that. So I'll have to ask the doctor why, when I took the radioactive iodine pill, nothing came up on the left side.
But from what I am reading about this, it seems doctors themselves don't really know that much about these things. (That's the impression I'm getting...)
You don't necessarily need an Endo, just a good thyroid doctor.  By that I mean one that understands that the most important indicator of a person's thyroid status is an evaluation for symptoms that occur more frequently with hypothyroidism than otherwise.   They erroneously think that a TSH test tells them all that is necessary.   In reality TSH doesn't even correlate well with the thyroid hormones, and except at extreme levels, has a negligible correlation with a person[s actual thyroid status.  The evaluation for symptoms should be followed by extended testing beyond TSH, for Free T4, and Free Te, the biologically active thyroid hormones.  There are also other variables that can affect thyroid.  Cortisol should be tested to assure it is adequate.  Reverse T3 is good to test initially.  Vitamin D, B12 and ferritin should also be tested  and then supplemented to assure they are optimal.  D should be at least 50 ng/mL, B12 in the upper end of the range, and ferritin should be at least 100.  

You can confirm all this by clicking  on my name and then scroll down to my Journal and read the overview of a paper on Diagnosis and Treatment of Hypothyroidism: A Patient's Perspective.  You can use that plus the full paper with a doctor to try and get the tests, diagnosis and treatment  needed.    All the recommendations are supported by extensive scientific evidence that is difficult for a doctor to argue against.  
gimel -- I got the results of the scan, so I'll post them for you to see if you can figure out what it could tell the doctor, who happens to be an assistant professor of endocrinology. I haven't spoken to her yet, but the PA told me they will go with the recommendations of the Endocrinology Association, or whatever it's called. And she recommended first the removal of the left lobe and then see if cancer cells are there, and if they are, remove the right lobe. The second best she said would be FNA but it is not as complete as removing the entire left lobe to analyze it.

"Markedly heterogeneous and enlarged thyroid. 4.9 cm left thyroid nodule. No
nodule is identified in the right gland.

US THYROID performed on 9/13/2018 12:46 PM.

REASON FOR EXAM: E04.9: Goiter

COMPARISON: A nuclear medicine thyroid study from August 7, 2018 which
demonstrated a cold nodule in the right lobe of the thyroid.

FINDINGS: The right thyroid lobe measures 5.1 x 2.2 x 2.9 cm and the left
measures 7.4 x 3.3 x 4.6 cm. The isthmus measures 2 mm. . The thyroid is
markedly heterogeneous. Vascularity is normal.

In the left thyroid, there is a 4.9 x 2.6 x 3.3 cm isoechoic nodule. No
nodule is identified in the right thyroid."

For a nodule the size of yours, I'd think they should be able to get sufficient sample with an FNA to tell whether or not cancer is present, however, since your thyroid is heterogenous - not all the same/uniform - that's probably why they want to do the lobectomy instead of FNA so they can get a look at the thyroid tissue itself.

As for the nodule... First - keep in mind that less than 5% of all nodules are cancer, so that's a pretty small number...
Your nodule is large and it's taller than it is wide, which is more indicative of cancer.  A cold nodule is one that doesn't take up iodine/produce thyroid hormones vs a hot nodule which makes too much thyroid hormones or a warm nodule which produces normal thyroid hormones.  A single nodule is more
likely to be cancer than if you had multiple nodules.

Did the PA indicate if they would be able to analyze the left lobe tissue "during" the surgery so they'd be able to go ahead and take the right one during the same surgery vs having to have a second surgery to get the right lobe out if it were necessary?  I'd ask for that to done, if possible in order to prevent having to go in for a second surgery.
Thanks. I only am being scheduled for the FNA left side with the big nodule. She said today that if it turns out to be cancerous they will schedule surgery in two weeks after the FNA biopsy. If the biopsy of the nodule does not show cancer, she said it does not mean it is not cancerous, but I am somewhat satisfied to wait a few months for another biopsy, unless there is a rather definite immediate threat. She recommended that I have the entire left lobe removed right away so they can get a clear picture if it is cancerous, but I don't want to do that. She also said that if they removed the entire lobe and it turns out to be cancerous, they would remove the right lobe also, period. If cancer is discovered in the FNA, I will have it removed, but I'm not sure if I'll have the right lobe removed also. Oddly enough, which I wonder about, nothing was seen in the ultrasound scan as far as the right lobe. During the radioactive uptake scan (if I am calling it correctly), the doctor said there is a "cold" nodule on my right lobe. But now it didn't show up in the ultrasound. Is that strange, that it showed as a cold nodule in the nuclear uptake scan, but nothing showed on the ultrasound scan? (Thanks, by the way, for your answer. I have scheduled an appointment with my family practitioner tomorrow, so I'll discuss some questions and concerns with her. And let you know asap.
She's right that if FNA doesn't show cancer that doesn't mean there is no cancer since the thyroid tissue is heterogeneous - not the same/uniform texture.

Of course, what you do is always your choice; however, if the left lobe is cancerous the chances are great that the right one will be as well.  Personally, I'd much rather have the entire thyroid removed than to have multiple surgeries as the neck area isn't a place I'd want to be cut too many times - maybe that's because I've already had 2 vocal cord surgeries and I know how many things can get damaged in there... Again that's a personal choice.  

Do you have a report showing a cold nodule on the right lobe or did the doctor just verbalize that to you?  I've had nodules disappear (come and go), so it's possible that nodule disappeared between the time you had the nuclear scan and the ultrasound if they weren't done back to back. It's also possible that it got missed on the ultrasound.  

Please do keep me posted.   gimel has given you excellent information as far as thyroid hormones, vitamin/minerals, etc also that will come in handy if you have labs with reference ranges you can post to help figure out why you're so tired all the time per your original post...  
Now that you mention it, I am a singer. At 74 much of my voice is not like it used to be, BUT I'd hate to lose what is left, since I enjoy taking my guitar or dulcimer and sing folk songs.  Thanks for all the information and insight. I'd hate to lose my thyroid but again -- I think FNA may be my first route. The blood work may have nothing to do with the possibility of cancer, and I'm more concerned about that right now, because of the nodules. As far as the report of the cold nodule, it was verbalized to me after the nuclear uptake. I doubt it disappeared because it was only about two weeks before the ultrasound, which is why they did the ultrasound and then found the thyroid to be hetereogeneous with the large node on the left side. That's why I'm hoping anyway that it is not cancerous, and I could agree that the best way to tell is by having the left lobe removed entirely, but I'm reluctant.
As far as analyzing the left lobe, the only thing I'm having done right now is the FNA, so only a little part of it can be analyzed.
Did you have thyroid surgery?
Hi Cindi... I'm sorry I just saw this post or I'd have responded sooner.  

Well, as a singer, I can understand that you certainly don't want anything further to happen to your voice.  Personally, I'd probably go for FNA, as well, to begin with, but if I had to have a surgery, I'd want the entire thyroid out in order to avoid a second surgery... I hope that makes sense.

I'm baffled as to why a doctor/radiologist (or was it the ultrasound technician?) would have told you there was a cold nodule, then not put it in a report.  That doesn't make sense, because a cold nodule is pretty important.  If it was the technician who told you it was a cold nodule, you have to take that with a grain of salt because technicians aren't doctors... I had a radiologist report that said I had a large nodule on my thyroid and my endo blew it off quicker than a breeze blowing out a candle, so, sadly, anything coming from a tech is suspect and could explain why it didn't get in the written report.  It may have been something they thought they saw but when the radiologist looked at it, it wasn't really there.
Of course, that's only speculation on my part, going from my own experience.

No, I haven't had thyroid surgery, but I've had 2 surgeries on my vocal cords, which are in the same area, only higher.  My surgeries were due to growths on my vocal cords (not cancer, but could/would have been shortly if left as they were).  The thyroid is removed via an incision in the neck whereas my vocal cord surgeries were accessed by going down my throat.  Either way, there's a lot of stuff in there that can be damaged.  Since I've already had 2 surgeries, if I had to have thyroidectomy, I'd not take a chance on having to have more than one surgery... But even if I'd never had the vocal cord surgeries, that's not an area I'd want cut open any more than necessary...

Hi, Barb, thanks for your comment. I am having the FNA in a few weeks. The doctor (an asst. professor of endrocrinology, by the way) told me after the radioactive iodine scan test that it was a cold nodule on the right lobe, which is one reason why they decided to take an ultrasound after that. The radiologist came in after the ultrasound scan and told me he didn't see a nodule on the right lobe. (Weird, ?) But he did see hetereogeneous surface throughout the thyroid. I do not recall if he said there was a large nodule on the left lobe. But the P.A. showed me the scan image and showed me the large node on the left side. It was then she recommended I have the left lobe removed to test it for cancer. I was resistant so we decided to get the FNA and take the chance of not finding cancer when there might be.  Thanks for the thought about having the entire thyroidectomy if the decision is made to have the left lobe removed, although she did say that if the left lobe is removed and it does not show cancer, the right lobe would compensate for the left lobe.
So I'm going in for the FNA in a couple of weeks, I'll keep you posted. Thanks. I hope all is going well with you now.
My next question is why would a node turn cancerous? I mean a node is a node, and cancer is cancer. (Isn't it?) So I don't see why a node itself that is benign would become cancerous down the road.
Well, doctors see different things than radiologists do sometimes, so that could account for the doctor seeing a cold nodule and the radiologist not seeing it.  I can't second guess them; I can only go by my own experience in which the radiologist saw a large nodule, but my doctor said it was only a shadow... you'd think a radiologist would be able to tell the difference and personally, I believe the radiologist over the doctor because I completely lost trust in the doctor, who is no longer my doctor.

The P.A. may or may not be correct that the right lobe will be able to compensate if the left one is removed.  Sometimes a remaining lobe can take up the slack for a short time, but usually, at some point, the patient ends up on thyroid medication anyway because one lobe is not sufficient to produce adequate hormones.

Your question as to why a node turns cancerous... do you mean node or nodule?  They aren't the same thing... A node would be like a lymph node; the nodule would be the growth on your thyroid.  As to why a nodule turns cancerous - thyroid cancer happens like other cancers -  when tissue changes occur.  At the risk of over-simplifying it, cells undergo genetic mutations which prevent them from dying off as normal cells would do, so they continue to grow into a tumor.  They don't really know why this happens.  I guess when they figure that out and can prevent it, they'll have a cure for cancer.
That's an interesting thought, because I was using the terms node and nodule interchangeably, and apparently they are not the same things. So I guess I am talking about nodules, which is what the P.A. said she saw (a large one) on my left lobe and recommended the entire lobe come out. Thanks again.
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Hi Sophiesudane, anyone having their thyroid gland removed should have an antibody test done first.  Your doctor should still do one on you to determine what type of thyroid disease you have.
You may also want your doctor to test your T3 and T4 levels through dialysis; it is more accurate and is beginning to become the norm.
Good luck.
HiWatner... Welcome to the forum.  I just wanted to point out that Sophiesudane hasn't been active on the forum since she started this thread in 2007, so it's unlikely she'll respond to your comments.

You're correct that anyone having a thyroidectomy should have had thyroid antibody tests prior to having the thyroid removed.   There probably isn't much point in having it done after removal, since the antibodies would go into remission once the thyroid is gone and there's nothing left for them to attack.

Once the thyroid is removed, a person would need to placed on thyroid hormones for the rest of their lives; they would, then, need to have Free T3 and Free T4 tested every time they have thyroid blood work done, since TSH is totally inadequate to determine whether the treatment they are receiving is adequate or not.  

It should always be specified on the lab order that FREE T3 and FREE T4 should be analyzed since ordering just T3 and T4 would mean Total T3 and Total T4, which are considered obsolete and of little value since they include both bound and unbound (Free) T3 and T4.  Since only Free T4 can be converted and only Free T3 can be used by individual cells, those are the parameters we need to test.
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